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Maintaining friendships while often unreliable.

Jane SamuelsJJane Samuels Posts: 1
edited 06/18/2014 - 6:30 AM in Matters of the Heart
Hi all, newbie here. I have cervical back pain, and am diagnosed with cervical spondulosis and degenerative disk disease. My disks sometimes slip, and my muscles around the area spasm a lot. Pain has been chronic for about 10 years, but im extremely active: i walk roughly 30 miles a weekend whan im able, and love climbing too. My friends see the active me, and only my husband (who is amazing) sees the times i loose the feeling/use in my arms, cant walk or have wet myself because i couldnt get up to relieve myself.

My back 'goes' at random times. Sometimes i move wrong, stretch, wake up immobile, go on a roller coaster when i know i shouldnt :D . I sometimes have to cancel plans, and i learned this week that some friends dont believe me when i tell them why i cant make it.

I feel like i cant win: if i spent 10 years complaining every time i was in pain, theyd want me to shut up very quickly, i think. If i dont complain and try to live my life as fully as possible, they dont understand.

Has anyone experienced this issue? What did you do?
Many thanks. Jx


  • LizLiz Posts: 7,832
    edited 06/17/2014 - 3:20 AM

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • As I am going through the same thing with friends and family. They just simply do not undersrand what it means to have constant pain. I have found its just best to be honest. If they ask me to participate in something upcomng I simply say "I'll just have to see how my pain level is that day". I have had many a deep conversations with all about whats going on with me and that they have to understand that right now I need their support more than anything and that in time things will change but I have to take it day by day. If they dont get it, well thats on them. It wasnt until they were told of my upcoming surgery and read my mri report that they finally started realizing what I am going through. I wish you all the best and am sending healing, pain free energies your way! Gentle hugs. :)
    Grade 1 Anterolisthesis/Spondy L5/S1 with Modic changes and mild disc protrusion, DDD, Osteoarthritis L2/L3, Stenosis, Sciatica, Herniation L4/L5. Scheduled for 360 spinal fusion/decompression July 1, 2014.
  • Most people cant wrap their myopic outlook around other peoples plights, your a dynamic person and a convenience to them, but heaven forbid you screw up their plans just because you've a little pain, willfully ignorant(self centered) enough to let you know that you got in their way and plans... ive run into that too many times and sick of it..i made changes, though,, i just flat out turn down invitations to walk around San Antonio, why? well let me see I cant walk too far, eventually my legs and back give out and i dont want to see you roll your eyes, sigh in condensation, and tell me, come on, its not that bad, its only a little further..like i care that they are having a great time.
    Taking your life back leaves you lonely sometimes, but your living it on your terms
    Bless you Jane for having the courage to live life even when it hurts, and keep that chin up, give your hubby a hug so that the sharing of a common burden is not so bad
    William Garza
    Spine-Health Mod

    Welcome to Spine-Health

  • the reason is healthy people don't want to be around ill people .I have lost my first wife of 12 years through my ill health and my so called friends have all gone .ill health is something to fear and your friends will on some level fear your health issues wrongly assuming that if they hang around with you the ill one they too will become ill ..I know and you know that's ridiculous but there is something almost primitive to protect the well ones .if they keep away from you the ill one they won't become ill themselves and if you manage to retain any of your friends you will find that you may not be able to socialise with them and even if they come to your home you will inevitably start talking about your health issues and even the most patient friends will only take that for a short time I am sure if you investigated it there will be much material about this subject from mental health specialist and my primitive brain theory will crop up in one form or another
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • In a lot of situations that can be true but I think there's a lot of habit in friendships. Out of sight, out of mind comes into play. We can't do things, we cancel & in the end people just forget to invite us. I know I can be guilty of seeing the world through rose tinted glasses sometimes. I know I've clearly been dumped by many 'acquaintances' but I like to believe that true friends will stick by us...it just turns out I have a lot less true friends than I thought I did!
    Osteoarthritis & DDD.
  • Sorry to hear it, but I do know what it feels like.
    L4-L5 fused at birth (congenital malformity). L-5-S1 bulge/degeneration, L3-L4 bulge/degeneration. Permanent nerve damage L5-S1 and L3-L4. Fused C5-C7.
  • dilaurodilauro ConnecticutPosts: 9,856
    Dealing with acute pain that turns into chronic pain is very difficult both physically and emotionally. I wont even touch on the physical aspect here.
    Unless you are bound to a wheelchair, use a cane or have some other easily identified aid, most people will not know you are in pain or even understand it. With the exception of one's eyes, we were no visible signs.

    So to others, that may seem as though we are ok. We can't be in that much pain if we do this or that. Especially since we dont look sick!. I love that term, sick. No, we deal with pain, its not a sickness.

    Some friends may allow you to open up to them and explain whats going on with you. It will be hard for them to understand, but if they are friends they will take the time. For many others, its a different subject. Friends may want to
    get together to go out and do this or that, to the beach, biking, etc. These are the ones that are going to view you as being a party popper, not wanting to have fun. Those are the ones , that I dont know how to address except to just say I cant and leave it at that.

    Take care of yourself first.... other things will fall into line
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • dilaurodilauro ConnecticutPosts: 9,856
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Jane, it is an incredibly lonely journey isn't it? What I have found since joining these forums is it lifts my spirits just knowing people are experiencing similar plights. I must admit that I have been my own worst enemy since my initial accident. It was not a topic of conversation as I suffered a compression fracture to my vertebrae in an accident at work when my partner did something really stupid. I didn't want to say bad things about my partner, so I kept my symptoms and issues very much to myself. Early last year I had a partial disectomy and lamenectomy and I think people at work were quite surprised. I suffered severe depression and withdrew socially and basically was very lonely. This time round (I've just had a fusion as my vertebrae collapsed) I am being much more open and allowing information to filter out to work colleagues. I'm hoping this will help with my return to work. I've never been good at asking for help and I hate being a burden to people. I haven't socialised at all this year - I leave the house for pt and surgeon appointments. I know who my true friends are now and I am so blessed to have them. It some ways it's a real positive that this has happened as it filters out the "good time" acquaintances from the true friends. I hope things look brighter for you soon. Kath
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